Feb 7 Dear United States, Your Healthcare System is Broken

I have endometriosis, a chronic reproductive disease that affects 1 in 10 women, including around 18 million American women. When I decided to move to the US from Australia to complete a Masters degree, ensuring I had access to adequate medical treatment, including surgery, was an important factor. I knew that the US healthcare system had its issues, but it has turned out to be even more broken than I imagined.

The US has some of the world’s leading medical specialists, including in endometriosis. However, getting access to these specialists all depends on your health insurance provider as well as the particular level of insurance you buy. These factors depend on your income, employment status, and marital status. I mention the latter because, when I started working after my Masters, I was excluded from my partner’s health insurance coverage because we are not married. At that point we had been together for four years. We offered to register our domestic partnership with the State of New York but this was rejected and we simply refused to get married away from our friends and family in order to get health insurance. Instead, I opted to pay one-third of my fortnightly salary towards an Individual Silver Value health insurance membership. Other than making me broke, this was supposed to get me access to some of the top specialists, or so I thought.

Many criticisms are often levelled at countries like Australia and the UK that have universal healthcare, which ensures that all of its citizens are provided with healthcare, generally for free. These criticisms are usually: (1) people have less choice in doctors; (2) there are longer wait times; and (3) it leads to less competition, meaning less innovation and access to advanced medical technology within the healthcare market. These criticisms tend to imply that the private health care system in the US is free from or better on such issues. However, my experience indicates otherwise. Let’s take a look at each one:

Myth 1: Patients in the US Have Greater Choice in Doctors

Let me begin by describing the process of finding a specialist, which I expected to be relatively easy. I found a number of endometriosis specialists that I asked my primary health care provider (typically, a GP) to refer me to. Unfortunately, many of these were “out of network”, meaning my health insurance would not cover my visits. I thought I could do a work around by calling the specialists to get an appointment and then getting a referral from my doctor once they had confirmed they accepted my health insurance. This process ate into my lunch breaks for over a week. Getting an appointment in the US is not as easy as calling up and finding an available time slot. The receptionist first has to verify every one of your personal details to ensure your health insurance covers the appointment. I think the quickest time I managed to do this is roughly 12 minutes (not including looking up the doctor online). Day after day my list of specialists dwindled in number and I was left with a very limited choice of specialists covered by my health insurance.

Myth 2: Patients in the US Wait Less Time For Their Appointments

After I finally found a specialist covered by my insurance that I was happy with, I experienced the US’ issues with wait times. The doctor I found specialized in laparoscopic surgeries – a type of key hole surgery where a camera is inserted into the body to look for scarring on internal organs caused by the endometriosis and removed with a laser. The wait time to see the specialist was 6 months. Not ideal, but I thought I could see a regular gynaecologist in the meantime and get any necessary tests done before I saw the surgeon. Getting an appointment to see a gynaecologist within a week took another round of lunchtime phone calls and then a visit to my primary health care provider to get the referral. The gynaecologist recommended two pelvic ultrasounds which would show any inflammation and give her a better idea on the course of treatment to prescribe while I waited to see the surgeon. She gave me a referral and I made an appointment for an ultrasound.

I was required to have a full bladder for the ultrasound so I made the appointment at 10 am on a Friday morning before work. I arrived on time and signed in. I waited patiently, bladder full, for 20 minutes. The receptionist notified me that my health insurance would not cover the test because I also needed a referral from my primary health care provider. I called my primary health care provider to get the referral faxed over. My primary health care provider told me that she could not provide the referral because my health insurance did not have her listed as my primary health care provider, even though I had been seeing her for a number of months.

While I can summarise this in three sentences, these interactions took a good 50 minutes by which time I was running extremely late for work and desperately needed to go to the toilet. I rescheduled the appointment for the following week and as I made my way to the subway I called my health insurance. While I thought registering the name of my primary health care provider would take 5 minutes, the system was down and the phone call with the representative took another 40 minutes. She promised to call me back once she had registered my doctor. She never did.

I called my health insurance provider the following Monday to resolve the issue. I was assured that my primary health provider was registered as mine and so I called the doctor’s office to ask that they fax through the referral to the hospital where I would be having my ultrasound the next day. Again, with a full bladder I returned to the hospital. This time I was told that while my gynaecologist had requested two tests, my health insurance would only pay for one. We tried to find a work around with no luck. Again, this process took 90 minutes by which time I was again desperate to go to the toilet but needing to hold it until we resolved the issue. I only got one test, as I was not willing to pay out of pocket any more than the monthly instalment I was already paying for my over-priced health insurance. In the end my health insurance did not get me in to see my desired specialist any quicker, the wait time on tests that should not have taken longer than 20 minutes turned out to be excruciatingly long, and I lost several hours of productivity resolving access to health care because of issues with my health insurance.

Myth 3: US Healthcare is Competitive, Promoting Innovation

This leads me to the third and final criticism on competitiveness in the health care market. Healthcare is a recognized human right. Article 12 of the International Covenant on Economic Social and Cultural Rights explicitly recognizes, “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.” Healthcare is not, and should not be viewed as a commodity subject to the rules of a competitive market. In free market capitalism there are always winners and losers and in the health care setting these winners tend to be health insurance companies. This means that the focus stops being on ensuring everyone’s right to the highest attainable standard of health and rather on staying financially competitive by charging customers more and securing more doctors within a limited network. This necessarily excludes a large portion of the population who simply cannot afford such access. According to the Henry J Kaiser Family Foundation an estimated 27.4 million Americans did not have health coverage in 2017, most from low-income families.

A Broken System

I recently changed my health insurance to a cheaper provider at a lower coverage level. My Silver Value Insurance was increasing by almost $50 and I could no longer afford to pay one-third of my fortnightly salary toward health insurance that in the end wasn’t proving to be worth it. Unfortunately, my new health insurance is not accepted by my primary health care provider nor the specialist I waited so long to see. So, I either choose to start the process of finding a specialist within network all over again or I just live in pain for my remaining 9 months in the US and know that when I return to Australia I will be able to see my endo specialist within a week and organize my surgery without the mental and financial cost I have experienced while trying to navigate the intricacies of the US health care system. I choose the latter but acknowledge that I am lucky I can return to Australia for treatment while I suspect thousands of women who suffer from endometriosis in the US are left to suffer with no such prospect in sight.

Suzie Wnukowska-Mtonga is a human rights lawyer and reproductive rights advocate. She holds an LLB from the Australian National University and an LLM focusing on Human Rights Law from Columbia University in New York.

Suzie Wnukowska-Mtonga is a human rights lawyer and reproductive rights advocate. She holds an LLB from the Australian National University and an LLM focusing on Human Rights Law from Columbia University in New York.